{"id":26005,"date":"2026-01-07T13:10:09","date_gmt":"2026-01-07T17:10:09","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=26005"},"modified":"2026-01-07T13:49:59","modified_gmt":"2026-01-07T17:49:59","slug":"seeing-forward-imagining-a-future-without-limits-for-emily-and-the-final-10","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/pt_br\/seeing-forward-imagining-a-future-without-limits-for-emily-and-the-final-10\/","title":{"rendered":"Vendo o futuro: Imaginando um Futuro Sem Limites para Emily e os 10% finais"},"content":{"rendered":"

Every birthday candle Emily lights has always meant more than another year older. <\/span><\/p>\n

It has meant <\/span>another year here<\/i><\/b>.<\/b> Another year of navigating a disease that never rests. Another year of choosing hope, discipline, and grit\u2014sometimes quietly, sometimes defiantly\u2014just to keep going.<\/span><\/p>\n

For roughly 90% of people with cystic fibrosis (CF) who now benefit from mutation-targeted therapies, the future has opened up. They\u2019re going back to grad school, launching careers, starting families, diving into hobbies, and traveling the world. <\/span><\/p>\n

But for Emily\u2014and everyone else in the final 10% unable to benefit from these breakthroughs\u2014<\/span>time is still narrowing. <\/b><\/p>\n

That\u2019s what Emily\u2019s Entourage (EE) exists to change, to speed lifesaving advances for everyone with CF so every single person with CF can live the long, healthy, boundless future they deserve, unconstrained by this horror of a disease. <\/span><\/p>\n

This year, <\/span>as Emily turns 41<\/a><\/strong>, we\u2019re pausing not only to celebrate what she\u2019s overcome, but to ask a different question altogether:<\/span><\/p>\n

What comes next if we dare to see forward\u2014<\/b>beyond CF<\/i><\/b>?<\/b><\/p>\n

So this birthday, we asked some of the people who know Emily best to go there and dare to <\/span>see forward<\/b> with us. <\/span><\/p>\n

What follows is a collection of those visions\u2014intimate, honest, and filled with longing. Not as fantasy, but as a reminder of what\u2019s at stake and why we race like crazy every single day and for every single person in the final 10%\u2014for that single perfect day free from CF<\/span><\/p>\n

\n

Jessica Rutstein Lazarus, PsyD<\/b><\/h3>\n

Emily\u2019s Entourage Board Member & Emily\u2019s Lifelong Best Friend<\/span><\/i><\/p>\n

\"\"Q: Close your eyes and imagine Emily living completely free from CF\u2014what does a single perfect day spent together look like?<\/b><\/p>\n

A: I have been so fortunate to share many life milestones, special moments, and fun adventures with Emily. We\u2019ve had so many days together that truly felt close to perfect\u2014even if we were just grabbing dinner and then ended up talking for hours.<\/span><\/p>\n

But to be truly perfect, I wish that she did not have to manage the additional responsibility of living with CF\u2014vigilance for extra health risks around us, keeping an eye on timing to factor in her nighttime treatments, and all the invisible calculations that shape every decision.<\/span><\/p>\n

A perfect day would feel light. Unburdened. Not defined by what comes next on the treatment schedule\u2014but by the moment we\u2019re in.<\/span><\/p>\n

Q: What is a moment you long to see her experience\u2014something she\u2019s always dreamed of, but couldn\u2019t do because of CF?<\/b><\/p>\n

A: I long for Emily to be afforded the ease of spontaneity\u2014to be swept up in the moment and go with whatever her heart desires.<\/span><\/p>\n

I would love for her to be able to just pick up and go\u2014to drive or fly off to a new destination without the heavy mental load of her treatment needs. To change plans. Extend plans. Say <\/span>yes<\/span><\/i> without first asking herself what it will cost her body later.<\/span><\/p>\n

\n

Coby Golinkoff<\/b><\/h3>\n

Emily\u2019s Entourage Co-Founder and Emily\u2019s Brother<\/span><\/i><\/p>\n

\"\"Q: Close your eyes and imagine Emily living completely free from CF\u2014what does a single perfect day spent together look like?<\/b><\/p>\n

A: We\u2019d be in a beautiful coastal town\u2014somewhere calm and charming, slightly off the beaten track and \u201cupscale granola,\u201d as Ea (my nickname for Emily) would say.<\/span><\/p>\n

We\u2019d start the day grabbing lattes at a tucked-away caf\u00e9 \u201cwhere the locals go.\u201d We\u2019d wander through town, then head out for a hike filled with fresh, salty air and wide-open views. We\u2019d discover a beautiful overlook, appreciate the view, and let the ocean air fill our lungs.<\/span><\/p>\n

The day would be full of deep and unhurried conversations\u2014about life, family dynamics, personality types, the latest podcast that sparked a new idea, or some productivity hack we\u2019re debating. Big things. Tiny details.<\/span><\/p>\n

We\u2019d end the day with family games, deep belly laughs, and a delicious meal\u2014ideally lobster or crab if it\u2019s a local specialty.<\/span><\/p>\n

Above all, the day would be defined by freedom. Unencumbered by breathing equipment, rigid treatment schedules, cough spells, or constant monitoring of carbs and blood sugar. <\/span><\/p>\n

Just presence. Connection. Joy.<\/span><\/p>\n

Q: What is a moment you long to see her experience?<\/b><\/p>\n

A: I\u2019d love for Ea to be able to jet-set freely\u2014exploring all the beautiful corners of the world she\u2019s always dreamed of seeing, with the people she loves most.<\/span><\/p>\n

\n

Marissa Nadel<\/b><\/h3>\n

Emily\u2019s College Best Friend<\/span><\/i><\/p>\n

\"\"Q: Close your eyes and imagine Emily living completely free from CF\u2014what does a single perfect day spent together look like?<\/b><\/p>\n

A: I would love nothing more than to have Emily come visit me in Los Angeles again\u2014without limits, without hesitation, without worry.<\/span><\/p>\n

We\u2019d head to the Malibu Country Mart, picking up sandwiches and, of course, black-and-white cookies, before spreading out a blanket for a picnic by the beach. Emily would kick off her shoes and run straight into the sand, chasing my boys, laughing as we build sandcastles together.<\/span><\/p>\n

There would be no pacing herself. Just presence.<\/span><\/p>\n

We\u2019d end the day with ice cream in hand, watching the sun dip below the Pacific, soaking in the kind of moment that feels simple on the surface\u2014but means everything when nothing is holding you back.<\/span><\/p>\n

Q: What is a moment you long to see her experience?<\/b><\/p>\n

A:<\/span> Emily has always loved Europe, and I dream of seeing her wander freely through the South of France or the small, charming towns along the Amalfi Coast\u2014soaking in the beauty, the food, the culture, and the magic of exploring the world without limits.<\/span><\/p>\n

I want her to enjoy every corner of it\u2014unrushed, unburdened, and fully present.<\/span><\/p>\n

I truly pray that this future becomes real\u2014that the breakthroughs she\u2019s been waiting for arrive in time, and that this life she\u2019s imagined for so long is finally hers to live.<\/span><\/p>\n

\n

Julia Kramer-Golinkoff<\/b><\/h3>\n

Emily\u2019s Entourage Co-Founder and Emily\u2019s Sister<\/span><\/i><\/p>\n

\"\"Q: Close your eyes and imagine Emily living completely free from CF\u2014what does a single perfect day spent together look like?<\/b><\/p>\n

A: When I picture a perfect day with Emily, it isn\u2019t something big or extravagant. We\u2019d start with coffee in the morning. No rushing. No underlying worry. Maybe we\u2019d go for a walk later in the day\u2014or even a scenic hike\u2014without stopping to calculate what her body can handle or what equipment she needs to bring along.<\/span><\/p>\n

Mostly, we\u2019d just be together. No coughing spells cutting moments short. No blood sugar scares that instantly shift the energy of the day. No oxygen tanks or medical interruptions pulling us back into reality.<\/span><\/p>\n

Just time. Just ease. Just my sister\u2014fully present, without her health standing in the way of the moment.<\/span><\/p>\n

Q: What is a moment you long to see her experience?<\/b><\/p>\n

A: Emily loves travel. She loves adventure and novelty. She\u2019s always been drawn to new places, new ideas, and the feeling of discovery.<\/span><\/p>\n

Over the years, I\u2019ve watched CF slowly take that freedom away from her\u2014quietly, incrementally, and painfully. <\/span><\/p>\n

Plans that once felt possible started to feel complicated. Then risky. Then unreachable.<\/span><\/p>\n

What I long for most is the day she gets that freedom back. To say yes to adventure without fear.<\/span><\/p>\n

\n

Michelle Eber<\/b><\/h3>\n

Emily\u2019s College Best Friend<\/span><\/i><\/p>\n

\"\"Q: Close your eyes and imagine Emily living completely free from CF\u2014what does a single perfect day spent together look like?<\/b><\/p>\n

A: In my mind, <\/span>Emily is back with all of us\u2014together in person, reunited with all of our best friends from Penn; the way we were always meant to be. <\/span><\/p>\n

We\u2019d start the day hiking to a beautiful vista with no consideration of altitude or oxygen level. No second-guessing whether it\u2019s \u201csafe enough.\u201d We just go. <\/span><\/p>\n

Afterward, we\u2019d spend the afternoon hanging by the pool, stretched out in the sun, catching up on life the way only longtime friends can. Emily would have endless energy. The day would feel light, filled with joy and endless, hysterical laughter. <\/span> <\/span><\/p>\n

Q: What is a moment you long to see her experience?<\/b><\/p>\n

A:<\/span> More than anything, I want Emily to be able to live each day as fully as she would otherwise\u2014without constantly managing her energy, planning around treatments, or bracing for health setbacks.<\/span><\/p>\n

We desperately want her back on our college girls\u2019 reunion trips. I want to see her act on her wanderlust without restriction\u2014taking new adventures to far away places.  <\/span><\/p>\n

And I long for a future where she moves through everyday life without the fear that a sudden lung bleed or infection could thwart everything. Where her days are defined by possibility, not precaution\u2014and where her only question is, <\/span>What do I want to do next?<\/span><\/i><\/p>\n

 <\/p>\n

\n

Why We\u2019re Seeing Forward\u2014Together<\/b><\/h3>\n

These imagined days aren\u2019t indulgent dreams\u2014they are north stars for EE.<\/span><\/p>\n

They reflect what the final 10% have been denied and what we are ferociously working to reach<\/span><\/p>\n

They remind us that survival is a victory\u2014<\/span>but freedom is the goal.<\/span><\/i><\/p>\n

#41for41 isn\u2019t just about honoring 41 years of courage, grit, and defiance. It\u2019s about joining together to create futures <\/span>beyond CF<\/span><\/i> for every single person living and breathing with CF.<\/span><\/p>\n

\ud83d\udc9c Donate $41 in honor of Emily\u2019s 41st birthday<\/a> and help create the future she\u2014and everyone still waiting\u2014has been dreaming of and deserves.<\/b><\/p>\n

DONATE $41 FOR EMILY’S 41st<\/a><\/strong><\/p>","protected":false},"excerpt":{"rendered":"

Every birthday candle Emily lights has always meant more than another year older.  It has meant another year here. Another year of navigating a disease that never rests. Another year of choosing hope, discipline, and grit\u2014sometimes quietly, sometimes defiantly\u2014just to keep going. For roughly 90% of people with cystic fibrosis (CF) who now benefit from… <\/p>\n

<\/div>\n

Leia mais<\/a><\/p>","protected":false},"author":1719,"featured_media":26024,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[260,259,258,261,257],"class_list":["post-26005","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-41for41","tag-41-for-41","tag-cure-cf","tag-emily-41-birthday","tag-emily-birthday"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/41for41-Blog-Post-Featured-Image-2.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/posts\/26005","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/users\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/comments?post=26005"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/posts\/26005\/revisions"}],"predecessor-version":[{"id":26021,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/posts\/26005\/revisions\/26021"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/media\/26024"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/media?parent=26005"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/categories?post=26005"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/pt_br\/wp-json\/wp\/v2\/tags?post=26005"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}